Newborns in crisis: An outline of neonatal ethical dilemmas in humanitarian medicine

Abstract Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions. In this paper, we first systematically review existing guidelines relating to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision‐making around resuscitation of newborns and withdrawal of treatment in humanitarian settings.

volunteers, with aid providers commonly burdened by extreme working hours and insufficient sleep, and commonly enduring considerable emotional distress in light of these challenges. 6,7 In 2014, women and children comprised over three quarters of the 84 million people in need of humanitarian assistance globally. 8 Among these groups, neonates are disproportionately affected. Of the 15 countries with the highest neonatal mortality rates globally, 14 are characterised by chronic political instability and conflict; excluding India and China, countries experiencing such unrest account for 42% of neonatal deaths worldwide. 9 Preterm births account for much of this burden. Reports indicate that following the Syrian Civil War, 26% of births among refugees living in Lebanon were premature, while 60% of neonatal deaths in the Zaatari refugee camp in Jordan were due to prematurity. 10 Existing literature on ethical questions in humanitarian crises primarily discusses questions relating to the care of adults, children and pregnant women. 11 However, neonatal care arising in these settings can result in distinctive internal and interpersonal ethical dilemmas for the humanitarian aid worker. 12 While numerous medical guidelines exist for neonatal resuscitation, few offer specific ethical guidance on these issues in complex situations. The case examples in Box 1 illustrate some of the challenging questions faced by aid workers in humanitarian settings. 13,14 In this paper, we first review existing guidelines relating to the treatment and resuscitation of newborns in humanitarian crises in order to determine the availability of ethical guidance for international aid workers. Second, we aim to identify and analyse some of the major ethical questions arising from the care and resuscitation of neonates during humanitarian crises that are inadequately addressed by existing guidelines, including consideration of long-term quality of life, allocation of limited resources, and conflicting cultural norms and values between aid workers and local communities. 15,16,17 There may be different ethical issues associated with different contexts (for example, acute emergency response versus ongoing medical support in settings of chronic crisis), though it is also likely that these will overlap; for the purposes of this paper, we will consider them together. 18 In the final part of this paper, we outline some general recommendations that might provide a starting point for the development of ethical guidelines relating to the medical care of neonates in humanitarian settings.

| Methods
We conducted a systematic structured literature search to identify existing guidelines on the resuscitation and care of neonates in humanitarian settings. 23 We searched databases (PubMed, Ovid  We also developed a list of 41 major humanitarian and medical aid agencies through this structured search. 24 Each agency was then contacted by email with a request for relevant guidelines, while the websites and publication archives of all agencies were also searched.
Guidelines were sourced and reviewed in full-text if they related to the resuscitation and ongoing medical care of newborn infants in humanitarian settings. Material was identified that provided guidance or discussion of the specifically ethical elements of newborn care.

| Results
Our search of published literature identified 3 articles deemed relevant to this paper as secondary references, however none included primary ethical guidelines. 25 One of these papers, a 2010 Cochrane review, found six existing medical guidelines on perinatal and child health in crisis settings. 26 All primary materials were sourced directly from humanitarian agencies via email or website searches. The results of agencies that replied to our email request, or had relevant publications on their websites, are available in Table 1.  the Children. Many of these were not specific to humanitarian settings.
Ethical discussion in guidelines predominantly contained either brief references to principles such as human rights and cultural values, or did not address ethical issues, rather making blanket recommendations for resuscitation of all preterm neonates (Table 1). Of these agencies, only MSF made detailed reference to specific ethical considerations such as viability and beneficence (Table 2). However, review of the MSF guidelines indicated that they may not always be sufficiently comprehensive to guide ethical decision-making in complex cases such as those described in Box 1. For example, while MSF guidelines emphasise adequate essential care, and consideration of the mother and child as a paired entity, more detailed guidance may be necessary on how to allocate resources between these two individuals when equipment is limited, as in the case of Asha. In the case of premature infants, MSF guidelines highlight the need for consideration of the "grey zone" of viability, medical and socio economic factors and expected long term quality of life, yet may not offer aid adequate detail on how to how to practically address the questions highlighted by Sarah's case. • Neonatal care should focus on mother and child as a paired entity, and be tailored to the setting, context and level of care available, limited by medical and ethical principles.

| E THI C AL QUE S TI ON S
• All infants determined to be viable should receive resuscitation and neonatal care, taking into consideration the pathologies of the child, the context and the medical environment.
• Gestational age, birth weight, clinical and neurological status, prenatal history, medical judgment and parental wishes should all be factored into decision making.
• Decision-making should be based on expected long term prognosis and quality of life in the best interests of the child, taking into account mid and long term prognosis, implications for cognitive development, prevention of suffering, preservation of dignity and access to treatment.
• Parents should be included in the decision-making process.
• Where medical interventions are destined to fail, healthcare professionals can decide to limit or stop invasive care to prevent harm.
• Cessation of resuscitation or limiting of treatment does not signify immediate death or abandoning of the infant. Palliation should be provided for the neonate once life saving measures are discontinued. Support to and involvement of the family is a part of this process.
• MSF should be attentive to quality of life, potential disabilities and short, mid and long term outcomes for neonates.

Guidance on Limitation of Care and Palliative Care for Newborns -MSF OCG 2017 ,32
• Palliative care is to be provided for children with medical conditions likely to be fatal or, in cases of survival, associated with unbearable sequelae. Palliative care does not mean to stop treating or to abandon the patient, or to cause, hasten or delay death.
• Initiation of palliative care should be a team decision including healthcare providers and parents/legal caretakers. The choice of the family should be respected and emotional socio-economic pressure on the family associated with their child's hospital admission should be considered.
• If the newborn shows severe organ dysfunction and/or severe congenital malformation, resuscitation should be ceased early. A rational treatment approach, considering limited capacities and resources in most MSF-settings is better for the child, the parents and the clinical team. Emotional and socio-economic pressure on the family associated with the hospital admission of their child need to be taken into account.
• Advanced resuscitation not to be provided for children with birthweight < 1000g or with severe congenital malformations. The cases provided earlier in this paper identify some of these dilemmas. In the next section, we will outline some of the potential ethical questions, divided into three broad areas: issues relating to the patient (particularly questions over long term quality of life), issues relating to patient selection and resource allocation, and issues relating to the treating team (particularly around conflicting cultural norms and values). This is not an exhaustive list of ethical questions or dilemmas common to neonatal care in humanitarian settings. We will focus on those issues that we consider to be particularly distinctive or important for delivery of newborn humanitarian care.

| Long-Term Quality of Life
In the case of Asha's newborn, one potential reason to withhold resuscitation was a concern about long-term disability if he or she sur-

| Resource Allocation
Resource scarcity is a significant concern for providers of humanitarian aid. 52 Missions are frequently faced with situations in which available resources are insufficient to sustain life, or inadequate to meet patient needs. 53 As exemplified by the case of Sarah (Box 1), the choices presented by a lack of essential resources create a recurring ethical struggle for aid providers, who must wrestle with distributive justice challenges in their capacity to provide care. 54 There are different levels of resource allocation in humanitarian missions. For example intervention choices between the needs of distinct populations (macro), different programmatic needs within a population (meso), and varying individual patient needs (micro). 55 Questions relating to newborn infants, are most likely to arise at the meso or micro-levels of humanitarian resource allocation (although these will be affected by decisions at the macro-level).
In the past, newborn infants have sometimes been regarded as a Successfully resuscitated neonates are likely to be highly vulnerable and require more extensive care. They are also completely financially dependent on families and aid missions for the funding of any treatment.
One important consideration for humanitarian missions is the need to achieve the greatest health benefit for those in need of their support.
Agencies such as MSF emphasise the provision of essential care as a means to saving the most lives. 57 One way of maximizing benefit would be to compare different health interventions and to selectively provide those that are most cost-effective. 58 However, it is challenging to assess the relative impact of providing neonatal care. The feasibility of collecting neonatal health data in volatile, varied humanitarian disasters is questionable, with many current methods fraught with errors and limitations. 59 The Burundi study of LBW infants found that over one quarter were lost to follow up, due to reasons including death, familial migration, and es- Prioritisation of children or young adults over preterm infants may lead to justice concerns. The guiding rationale of clinical triage often reflects egalitarian principles, rather than strictly utilitarian ones. 66 Alternatively, selective provision of treatment to newborns may conflict with the values of communities. Care of the mother, or of other non-neonate patients, may be more desirable for local communities, depending on the value they place on saving newborns. 67 (That might be one explanation for the desire to focus medical attention on Asha rather than her infant (Box 1)). One important consideration for aid agencies will be how or whether to reflect local cultural norms in their delivery of healthcare.

| Competing Cultural Norms and Values
International aid workers may face myriad cultural differences and challenges during humanitarian crises that are of distinctive importance in the context of neonatal care. 68 These may include conflicting religious and traditional beliefs regarding the moral status of the neonate; divergent perceptions of the roles of parents and treating teams with regard to medical decision making; and lower levels of health literacy than is common in Western nations. The ability to understand, communicate and navigate these differences presents a significant challenge to aid workers, who may be required to act in opposition to their personal views and training in order to meet the expectations of local communities and parents.
The LMICs which often play host to humanitarian disasters are likely to exhibit a range of attitudes toward neonates, particularly those who are preterm or disabled. Reflections from Cameroon promote the unconditional acceptance and moral worthiness of the neonate, irrespective of disability or gender. 69 Conversely, perspectives from countries such as India indicate that neonates may be viewed as mere additions to the family structure, rather than individual persons with distinct moral and legal rights. 70 Many communities worldwide do not consider a birth as 'complete' until the infant has survived the dangerous initial neonatal period. It is only after this period that the infants are named and recognized as distinct individuals. 71 Religious beliefs may also be of greater significance than is common in many secular democracies in the developed world, often playing a significant role during decisions regarding neonatal care and the withholding of treatment and resuscitation. 72,73 Attitudes of parents and physicians in LMICs may be far more heavily influenced by potential disability, as well as the gender of the neonate. A survey of Mongolian healthcare providers found that fewer than half felt that newborns with birth-defects would be accepted as normal in society. 74 Attitudes among physicians in India reflect a similar degree of discrimination towards disabled infants, with an observed preference to only discharge healthy babies. 75 Disabled children commonly experience significant individual and social neglect in Indian society, while female babies may also be stigmatised. 76 Families are often less willing to pay for intensive care and medicines for female infants, or to attend follow-up consultations. 77 Cultural differences may also influence how ethically fraught decisions are approached. In Western societies, it is common for parents to make decisions alongside the treating staff, with an overwhelming majority of health-care providers believing parents should have the final say in their infant's care. 78 Such collaborative approaches may not be the norm, or may not be as practicable, in humanitarian crises. Providers in some settings may be required to include elder family members in treatment decisions. 79 Aid workers may also be required to navigate exclusionary gender roles when communicating with parents. 80 In other arenas, doctors may be expected to adopt complete responsibility for decision-making. Such approaches are common in some countries, in which it is typically considered unfair to impose responsibility on the parents of the child. 81 ,82 Parents who are poorly educated or from low socioeconomic backgrounds may be unable to understand medical terms or comprehend the seriousness of potential disability for the neonate, impairing their potential for involvement in the decision-making process. 83

| DE VELOPING E THI C AL G U IDAN CE REL ATING TO NE WBORN H UMANITARIAN C ARE
The distinctive ethical question of when to resuscitate neonates is complicated by the volatility, resource limitations and cultural, geographical and situational diversity of humanitarian aid settings. Development of detailed ethical guidelines and policies specific to neonatal care is necessary for the provision of considerate, consistent and effective care. 84 Our review of existing literature identified little current guidance relating to neonatal ethical dilemmas in humanitarian crises. In the previous section, we aimed to identify and outline the distinctive ethical questions in this field. It is not possible in the space of this short paper to provide definitive answers to these challenging questions. Nevertheless, some preliminary conclusions or suggestions may be worth highlighting.

| Resuscitation and Stabilization
While resource allocation in humanitarian crises is ethically fraught and challenging, prioritization of simple, cost-effective interventions for the care of newborns should be uncontroversial. Within hospitals, delayed cord clamping for 60 seconds or more may be of distinct value for infants with respiratory difficulties by providing placental transfusion. 85 Use of room air as a default for neonatal resuscitation is perhaps uniquely cost-effective in being technically easier and cheaper (than resuscitation in oxygen) and likely resulting in improved outcomes. 86  However, legal recourse is unlikely to exist, or be practical, in humanitarian environments. Resuscitation against the wishes of the parents will likely cause significant distress and mistrust. Families may simply abandon, or be unable to care for the infant, due to financial limitations or cultural beliefs. 96 Aid missions are poorly posi-tioned to engage in care or adoption of abandoned infants, and may lack the time and resources to liaise with potentially inundated local adoption services.

| Withdrawal of Treatment and Palliative Care
In circumstances where the outcome of resuscitation is uncertain, as in the case of Asha's infant, aid workers might consider commencing resuscitation (assuming availability of necessary resources), with subsequent monitoring and assessment. Following resuscitation, review and assessment of the neonate's survival prospects and likely quality of life should guide treating teams on whether to continue active treatment or to shift to palliative care.
Decisions should be guided by concern for the infant's best interests, with attention to both quality and quantity of life, and availability of resources. 97

ACK N OWLED G EM ENTS
Work on this paper was stimulated and enormously aided by conversations with Philippe Calain and Marie-Claude Bottineau, at Médecins Sans Frontières, Geneva.

FU N D I N G
Dominic Wilkinson was supported for this work by a grant from the Wellcome Trust WT106587/Z/14/Z.

CO N FLI C T O F I NTE R E S T S TATE M E NT
The authors declare they have no conflict of interest interests. long-term disability resulting from complications. Given those uncertainties, it may be warranted to provide resuscitation in the first instance, with a plan to withdraw treatment and palliate if the infant were to require ongoing respiratory support. If treatment of the infant would compromise the treatment of their mother, the latter should be prioritised.

| Navigating Cultural Norms and Values
Cultural and religious differences, historical conflict and mistrust, greater patient vulnerability and linguistic barriers must be navi-

| CON CLUS ION
Humanitarian medical care is logistically, technically and ethically complex. Extension of humanitarian medicine to include newborn infants raises additional challenges for those providing and organizing humanitarian medical care. We have reviewed existing guidelines that inform medical care in such settings, described some of the ethical challenges, and suggested key ethical principles that can be applied to neonatal care decisions in these settings. Prioritisation of 100 Turner EL, Nielsen KR, Jamal SM, von Saint André-von Arnim A, Musa NL, op. cit. note 59.